calvin's story

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11.16.2012

friday faves - before dawn

Hiss. Buzz. Crackle. All night long, every night, I listen to the monitor from
hell. Got to replace the battery to see if it will stop its loathsome sputter. That monitor is one of those things that we can’t
live with and we can’t live without, had been there for us when Calvin had a
seizure in bed while we were eating dinner once. We’d found him mangled, partly on
his stomach, partly on his back, with his face smashed into his down comforter.
Finding him like that made me wonder, if we hadn’t had the monitor, would he
have suffocated during that seizure? Would we have gone up to bed that night to
have found him dead, like some parents of kids who have epilepsy do, like all
parents of kids who have epilepsy dread.

The downside of using the monitor is that I get very little
sleep, waking to every stir, swoosh, sigh, whimper, snort, rustle. This
morning, long before dawn, not unlike the previous five mornings—perhaps the
previous five years—I awoke to the sound of my boy smacking and rubbing his
forehead, likely due to a headache either from his new anticonvulsant drug, his
ear infection, or both. So I repositioned him and covered him for what felt
like the millionth time, and gave him a Tylenol and a sip from his bottle.
Within forty-five minutes he was asleep.

In sheer exhaustion and exasperation I crawled back into bed
angry at the world. Through the windows I watched the familiar, black
pines
swaying gracefully in the wind, heard the chimes' melancholy tune,
thought about Orion and the man on the moon hanging silently somewhere
in the sky over our house and felt sorry for myself. And then, my mind
wandered to another family who might be sleeping under Orion's gaze,
whose father wrote to
me last fall about his son who, at the time, was hospitalized for a
risky,
medically induced coma to try and stop his seizing:

no issues at birth,
normal delivery. Began having seizures at 3 mos. following DPT immunization.
Hundreds of myoclonic seizures per day. Lived this way until aged 7, when
seizure type flipped abruptly to grand mal. About 80% of his seizures last
longer than 30 minutes. They can go up to 90 minutes. He desaturates in many of
them. Significant brain damage. Fourteen years old but developmentally about
3-4 years.

Then I realized how so many of us have it hard, some more
than others, and I stopped feeling sorry for myself, wanted the hurt of others
to go away.

Calvin slept soundly the rest of the night and didn’t wake
until six. I rolled out of bed feeling somewhat rested and thankful that we
weren’t in a hospital, thankful that the night’s anxious, hopeless, melancholy
dissolved some with the dawn. And reaching over to turn off the hissing monitor
I heard my child’s sweet eager coos calling for his mama, even amongst all the
hissing and crackle—and I felt grateful.

In honor of epilepsy awareness month,
please share Calvin's story and help bring us one step closer to a cure.
It's as easy as pushing a button.

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My son Calvin was born six weeks early with significant neurological problems of unknown origin. When he turned two he was diagnosed with epilepsy, which eclipsed all other adversity he'd encountered. No drug or dietary treatment has completely controlled his seizures. I write about the challenges we encounter, and the great perspective about the world we gain as a result. I post something several times weekly in an effort to increase epilepsy awareness, dispel the myths, promote understanding and inspire empathy, all in hope of a cure. I sometimes write about politics, racism and other social injustices.